In my belief this is what caused my RLS! - Restless Legs Syn...

Restless Legs Syndrome
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In my belief this is what caused my RLS!

Mrsdonnie
Mrsdonnie

For many years I was taking codeine for pain. After I got hooked on it the codeine took over my body. I finally got off them about 2 years ago and ever since I have gained RLS. I sleep maybe an hour a night if I'm lucky. I don't really have triggers they ache every night. I started smoking pot before bed and that was the only thing that would allow me to sleep. On nights I don't have any I don't sleep 5mins which is horrible because I work alot and have 2 son's who like to keep me on my feet. I've just come to realize in the last week that when I'm on my feet walking all day my legs are a bit calmer at night they don't ache so much. I worked 14 hr shifts the last week and got more sleep then I have in awhile. I'm definitely not saying exercise is a cure by all means because they do still hurt and I do still have a very hard time falling asleep ... but when I do fall asleep after walking and climbing stairs all day I get about 3 to 4hrs sleep straight. I do find any medication at all irritates them 95% more whether it's pain meds anti depressants or even just an anti inflammatory but this could only be In my case. I can't take any sleep aid because I'm afraid of getting hooked on something else. So for me I have to suffer through it all without any help of a pill to sleep or for the pain which is why I turned to pot... even that sometimes does not help because they are paining that bad. If anyone has any home remedies that does not include pain or sleep medication to help them stop hurting and to help me sleep I would love to hear your ideas.

21 Replies
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I suspect you are suffering rls as a result of withdrawal symptoms from giving up the codeine- and well done for doing that- it can't have been easy.

This can go on for a few years until your body completely forgets the longing and craving for the codeine.

Unfortunately, codeine and the opiates are the only good long term meds for rls.

Try taking magnesium supplement- mg citrate is worth trying - 200mg. Or even having an epsom salt bath- 3 cups epsom salts in warm bath for 20 minutes.

Good luck.

Mrsdonnie
Mrsdonnie
in reply to Madlegs1

Some of my doctors are a bit overwhelmed with what to do for me as I can't take any pain meds by choice. Normally they would try iron supplements but I have iron overload already so I can't take them.

Sounds far worse than anything I've experienced, so sorry. I think you need a specialist referral.

I would try a brisk hours walk every evening and hard swim for an hour once or twice a week. No alcohol, no sugar. This requires discipline but does help (me) also being as fit as you can (not overdoing it either!) helps offset depression. I also overdose on Nytol on occasion.

Had RSL on and off since 20's. I'm 54. Always done loads of stretching, kung-fu and running etc. Sometimes i felt the exercise caused a 'restlessness' but was definitely better overall for hard exercise. Now RLS is worse because of a lack of regular exercise. My knees are shot with arthritis! Lol! Something attacks us all the time.

Good luck.

Mrsdonnie
Mrsdonnie
in reply to Tom77

It does get really bad. Most nights I'm up all night and just want to crawl out of my body because I can't take the pain. I have seen doctors and as I have said I can't turn to pills... I was on them for 14 years for pain. I'm 36 so I know I have a very long road ahead of me. I use to go to the gym alot and I will say when I was going I did over do it. I was going twice a day 3 1/2 hrs each time so when I stopped going I could feel my body withdrawling from that as well. I'm not sure exactly what caused the RLS but with what I put my body through I'm going to say I played a big part in it. I don't drink and don't eat very much I do stay away from sugar as much as possible but I do smoke and drink coffee and from what I've been told and read those things only make it worse. I also suffer from insomnia even before the RLS even started so that just adds to the torture.

I don't have arthritis though... that mist be hell for you I'm sorry to hear that.

When you say "pain" can you describe what your personal definition of pain is? People describe RLS in many ways. Also, too MUCH exercise CAN be a trigger. Should not exercise 3-4 hrs before bed, it does not allow your core temperature to cool down. And, that is needed to get good sleep, RLS or not.

Hidden
Hidden

Over exercising wont cause RLS, but can make it worse. Its best to find how much is best for you regarding exercise, some can do a little , some can exercise harder, but most find hard exercise can make RLS worse and exercise at night is not good for most, light stretching is what most try. Smoking and drinking caffeine might be triggers for you but not for everyone Nytol i would be wary of, that can also make RLS worse. most OTC stuff can. Have you had a ferritin level test done by your doctor..? That can make a difference to RLS if yours is low. Ask your doctor about this. For RLSers our ferritin level needs to read 100+ so if yours is low taking iron pills MIGHT help with your symptoms. There are other med options you could try. Look at the rls-uk.org website for the list of meds available. Hope you find something to help you soon. OOPS, i just re-read your reply further up and see you are one of those who has iron overload. so no iron pills for you.

Mrsdonnie
Mrsdonnie
in reply to Hidden

Lol thanks for your reply. I seem like a lost cause with this. Yes I do have iron overload so I can't take any supplements that have iron in them. I use to go to the gym alot but not anymore as I do work alot and in my work I'm literally walking and climbing stairs my entire shifts and that does seem to calm them down a bit. My doctor has run so many tests I can't be sure exactly what they all were but the results turned up that she could not recommend any supplements or anything to help improve them.

Mrsdonnie
Mrsdonnie
in reply to Hidden

I'm also from Canada new Brunswick and there is almost no doctors here that specialize in RLS which makes this less easy

Hidden
Hidden

I know it can be hard in Canada for getting treated for RLS. depending where abouts you live. But i know the "normal" meds for RLS should be available, as in....Mirapex, Requip or the Neupro patch all those are dopamine meds and you have to keep the dose very low. Then there is Gabapentin. which some find works well. Or even a combination of a dopamine med low dose and a low dose of Gabapentin. Not sure what the tests were for either, as RLS cant be tested, only gets diagnosed by what you say your symptoms are. So, put those meds to your doctor and see what gets said. Dont give up. :)

Mrsdonnie
Mrsdonnie
in reply to Hidden

She tested me for Parkinson's and other things plus tested my blood to see what I could take for the RLS

Hidden
Hidden

A blood test wouldnt tell her what you can take for RLS. Not that i know of anyway,

Mrsdonnie
Mrsdonnie
in reply to Hidden

The blood test showed my iron levels etc so she could get an idea on what I can take

Hidden
Hidden

Yes for your iron levels so she knows you cant take iron pills. But no one has a blood test to see what meds to take for RLS

Mrsdonnie
Mrsdonnie
in reply to Hidden

No RLS can't be detected from blood work I'm aware of that but it can determine what supplements I can and can not take as I can not take any pain meds. She was hoping my iron was down so I could take them and a few other things she wanted to check. End result was iron way too high in fact has to come down and she wanted to check vitamin options my levels on that. Turned out she couldn't recommend anything but home remedies

Hidden
Hidden

Is there a reason you cant take any of the dopamine meds or Gabapentin. ?

There ARE other meds to take besides pain meds. You need to research a little more. I have the same question as Elisse, why not dopamine meds, or Gabapentin, or other med listed. rlshelp.org go the treatment page.

I've never looked into them in just very paranoid with any pills because of my addiction I don't want to fall back into that it's only been over a year since I've been off them and as any addiction it doesn't take much to slip back into the habit. I will do my research on it and ask my doctor about the meds you guys are talking about. Thank you for all the info. I'm new to the research

Well, the other meds are not like taking pain meds. But only having these symptoms for 12 weeks is ODD. I understand your issues about addiction, BUT, things can be safely managed. But, sounds like your doctor has done all the tests he/she can do.

My symptoms have been for alot longer then 12 weeks they started before I got off the codeine. I'm just not sure how long they have been going on as I was on the pills 24/7 it just got alot worse once I stopped taking them. It's not so much pain as it is irritating it feels like needles constantly being poked in my legs unless I'm moving them it also feels like my legs are bruised everywhere and someone is pushing on the bruises it's really hard to describe the way my legs feel. It doesn't just happen at night it's during the day too if I'm just sitting trying to relax... very uncomfortable.

By all means I am going to talk to my Dr about these meds that you guys are talking about. She doesn't have alot of info on RLS but she is doing her research as well. I'm only her second patient with this problem

Keep up the pot

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